[Professor Charlie Whiffin stands at a podium presenting]
Here we go. Okay, so first of all, I wanted to say thank you for coming, but also thank you for all of your support and guidance and mentoring. Thank you so much Hutch, it took me a long time to be confident to say - to call you Hutch instead of Professor Hutchinson.
And just without all of that support, I wouldn't be here at the moment. Good research is not an individual pursuit, it's a team sport. And we must all work together while we push doors for us, push doors open for ourselves, we should always open and hold them open for others.
This lecture comes at a particularly difficult time for the University and also the wider HE sector. And it would be remiss of me in celebrating this achievement without acknowledging the generosity, kindness, and mentorship that has paved the way for me to succeed.
I'm particularly indebted, I have to say to the very strong women that I have met and multi-taskers that balance the needs of family and personal endeavour. And I have met and learnt from this along the way and made everything seem possible, and limits were, unnecessary. So, thank you.
I also want to say thank you to everybody in the room, but also online. I have lots of, collaborators, nurses, medics, researchers, students, from Derby to Cambridge, England, Pakistan, Cameroon, India, Tanzania. So, I was just, it's lovely to know that they are with us. And also my mum.
So an inaugural lecture, first of all. Wow. Like, I saw the board outside the University with my name on it as I drove past with my children in the car, and I couldn't be cool at that moment, seeing my name emblazoned there because it is super cool!
And it's so hard to be somewhere where you always imagined that you wanted to be and then to achieve it. And I, I do that, in a very humble way in that, like I say, I've done this together and I was coached (coached?), counselled, mentored on my application for, for this promotion.
And, Dame Professor Jessica Korner, was very kind to give me an hour of her time and looked at my application and she said this is excellent, but you don't talk enough about what you do, what you need. A professor is an individual title, and I said, but I work with others, I collaborate. This is part of who I am.
And actually, to be able to stand here, I had to talk about the things that I had led and my individual endeavour, but we do that together. So when my children ask what is an inaugural lecture, and of course I said they are here, right there (hello) and they said, well, what is it, an inaugural?
And I asked, I asked the internet. It says it serves as ‘a platform for them to introduce themselves, their research and their vision to the university community and the wider audience’. So I'm very pleased to say I have a lot of that wider audience here.
And then Grace said, "but then mummy is it just about you?" And I said "I suppose so, kind of!" So, like all good stories, let's start at the start. So where did it start?
So I was born in Ripon to David and Augusta Clark, but raised by my mum, who taught me the importance of hard work, love and belief in myself.
I actually grew up not far from here. So after being in Ripon, we moved to Spondon, which lots of you will know is not far from here. I grew up in the grounds of the Homestead, where my mum was the guesthouse manager.
I left Derby to go to Secondary School and then returned to Derby for A-levels at the brand new Landau Forte College.
At that point, I had no lifelong ambition to be a nurse. It wasn't even on my radar. Apart from all of the aptitude tests that I took at school all led to me being a nurse. So I think because of that, I actually looked for active ways not to become a nurse.
And then I think success is always paved with failure. So and actually, it's a really important part of life to learn from failure and learn new paths, new opportunities.
So when I failed to meet my expected grades at A-level, and to start what was the first in the country for paramedical sciences at University of Sheffield, I was a bit lost. I didn't really know what to do.
So off I went to the local nursing home, up the road, the old lodge at Etwall, where I found a job as a care assistant. I loved it, I just knew I'd found my calling and I have never looked back.
And although part of this presentation will talk a little bit of my evolution of my identity from nursing to researcher and officer. Once a nurse, always a nurse.
So, after spending a year at the nursing home, I applied for university degrees. And because of that failure in my A-levels and failing to meet what I thought was my potential, I studied really, really hard and graduated with a first-class honours degree in adult nursing. I met my friends for life, who have supported me through absolutely everything.
Once I qualified, I had organised my own elective at the Walton Centre for Neurology and Neurosurgery, where I just loved… I fell in love with the discipline. It was an amazing purpose-built unit and doing amazing work.
But my friends had gone to Australia and I soon followed. So I went with very little money in my back pocket. I almost wasn't allowed in the country. So I worked at the Royal Sydney. I worked on Mornington Island, I worked in Nauru, I worked at the Royal Melbourne, the Royal Perth, and worked and travelled around, but family brought me back home.
There were reasons to come back and I ended up in Derby again. So again not knowing what I wanted to do with my life, I had this kind of idea. I'd kind of like to be a lecturer. When I was at university my friends would attest to the fact that I would look at their assignments. I'd cover them in red pen. I loved all that. Loved all the power of that - that’s brilliant!
So I think I was always kind of destined for this sort of destination. And I happened to find an advert for nurse lecturers at what is now the University of Suffolk. At the time, it was Suffolk College. So I applied just out of, you know, I would have a go. And to my surprise, I got the job.
I often look back at that interview because I'm not sure I have amazing interview skills, but when the chair of the interview panel said, “so, Charlie, I meet you in ten years at the supermarket. What are you doing?” I said, well, other than you know, the weekly shop, I said, "Dotty," that's a really, really - her name is Dorothy Kennerley - I said, "it's a really good question. I have no idea. But I will have my PhD."
So I think she saw in me what she wanted to breed at Suffolk College, which was a strong culture of research, which was quite unusual at the time. I had some advice from the dean of my own college, which was, Liverpool John Moores University, from Pat Furby, who said the first year will be hell. And then it kind of gets okay. And she wasn't far wrong from that, I have to say.
But after almost ten years in Suffolk, one wedding, and a nearly complete... completed PhD, we were heading back to Derby. I couldn't quite believe that I was coming back home. It wasn't my first choice, I have to say, but this is the place that I feel most comfortable. It is an amazing opportunity to be here, to work in this institution. I am very lucky and it has made me the person I am.
So that's me at Derby.
I have to say, over my 20 years in academia, I have taught everything. So from pre-registration nursing, to post reg, and back again, whether that has been, blood pressure and hand washing to cranial nerve examination, that was a very late night of prep, I have to say, from level four, what is a nurse? to level eight What is it our philosophical positioning tells us about being a nurse.
But there is something about being a nurse that always puts patients first. That's why we do it. So in academia, we always put our students first.
I always say that, pre-registration nursing. Pre-registration nursing is a bit like being on the front line. There’s so many of them! And the Cohorts get bigger, the classrooms get bigger, the student needs get more acute. And we always put our students ahead of our own needs.
So trying to fit in research around that personal commitment to student achievement is very difficult. And I said in, in the brief for this particular lecture that it is not for the faint hearted. It really isn't. But if it is important to your value stream, you find a way.
And the longer I was in higher education, I kind of saw my own identity starting to shift. And what was the particular telling move was when my husband wouldn't let me take his stitches out. Because after all, I wasn't a “proper nurse”.
I would have done a better job, I have to say. But I love being in HE, and people always ask me, do I miss patients, being in higher education? But the students are the patients. The students have as complicated needs, you know, rehabilitation in the learning journey when they fail an assignment, and when you see them at graduation is an achievement that that is on parallel with patient care.
But really having, my first module was anatomy and physiology, which wasn't my best strength. I have to say. I moved quite quickly into the research module.
So, the level five research module. A special place in my heart is reserved for the level five research module. Now, I've taught research about all levels from level four to level eight, from the reluctant learner to the passionate, you know, willing PhD student. But there's something about the level five research module that’s always been part of who I am.
And I think this quote is quite telling. It was the best of times and the worst of times. It was at the time the first module that I taught at level five. So this is the second year of the three-year programme, which was called ‘Getting to Grips with Research’. I always liked that title - and the students’ attitudes kind of ranged from dismay, disdain and ambivalent, but then starting to kind of move along a journey of intrigue, interest, maybe a bit of self-belief.
But it wasn't an easy module. And the first level five Getting to Grips with Research that I'd led was the first time the module had, that research had a specific module that the nursing program had had a 20 credit module for research. And the students hated it, hated it.
We even built it in a, debating session where half of the room had to fight against research and the other room had to fight for it. And that didn't work. Even on a night out in Ipswich, I'll never forget a little tipsy student coming up to me and putting her arm around me and saying, ‘we all love that you love research, but we all hate it!’
But I think there's something about teaching the reluctant learner and seeing that journey from someone who they've heard it before. It's the research module. Everyone's going to fail. They'll all hate it to some, you know, gentle sense of, ‘oh, actually, I can read this academic paper’. ‘I can make sense of some of this language’. ‘This actually might be for me’. And the secret whisper of ‘golly. I actually quite like this. But don't tell anybody else’ because it's a bit of a dirty secret.
But it was also the making of me, I think, because in that module, I honed my skills at research in terms of the theory and delivering that to students who were completely novices to research and trying to break down some of those barriers.
But actually, what I was seeing in the classroom and part of our professional identity, it's really important to contribute to the evidence base.
And yes, I'll talk about some of the academic papers and the stuff that, you know, you know, but actually contributing to professional literature and the professional evidence base by bringing some of the challenges that we face in the classroom.
And I'm putting them out there so that other people can learn from our experiences, maybe not make the same mistakes, maybe make their own.
But I was really lucky to work with a lady at Suffolk who was always writing alongside her teaching responsibility. She was always contributing to the professional literature.
And I think that is a core element of professional practice and applied disciplines. We need to be able to do that.
So I wrote lots of articles. And I think when you're making those papers and even now you still print them off and you show your mom and you get quite proud. No, look, that's my name. And, oh, I could maybe do a little bit more to that. But I also think it's about, you know, reaching out, finding opportunities.
And also now that we have, the ability to have our work rated by customers, so this little book that I wrote a couple of years ago, I just approached the publisher and I saw their list of titles, pitched an idea, and they invited me to write the book. It's quite small. It's only about £6.99 on Amazon.
I just think it's a great stocking filler! But actually that landed really well.
And actually the feedback on that book is your methodology can be a little bit messy. You know, it's the first word that people hear that doesn't make sense. What is this big thing?
And actually the idea of that book was to just break it down and put it in a language that people would understand.
And that was always my philosophy in the classroom, like, how do we make really complex language concepts actually accessible for the students so that the students can find their way and engage in the research and put that research into practice?
Because that's really, really important. So fast forward, another book.
So again, the level five research module, what we saw in the classroom and over a decade of teaching level five, the same cohort, the same problems. Different students had the same problems.
They all came in with a desperate belief that they were going to fail the module. They all came in with a sense that this is probably the hardest thing they're ever going to do. And how do we break down those barriers?
I'd never seen a book that students went to and said, ‘oh, this is a nice book. You know, this is an interesting one’. Research textbooks are always quite dry.
They are always, either something so simple that actually we actually advise students not to reference solely from that book, but those are the books that are accessible, or they're so complicated you can't learn from them.
So there is a book that I love called The Sage Handbook of Qualitative Research. Sounds quite friendly. This handbook is like this, it’s massive. And actually what that does is it shows this graduated sense of some basic concepts. But actually, as you delve into the discipline, these concepts become much more complicated, much more complex, and also their sense of orientation to the subject matter shifts. Because, you know, not all authors agree. And that's the first time they found that, because coming out of level four modules, the first year modules concepts are quite a quite, quite stable. So we all agree where the heart is. For example, we know where the brain is, we don't have endless debates about that, but we do have endless debates about what is qualitative research, for example, what is methodology?
And lots of people feel very strongly about their position. So when the students came up with a book that says one thing and another book that says another thing, that they feel that that's the reason why they don't understand, not the fact that that is just something that happens.
So I pitched a book again, to, this time to Wiley, and I had the grand plan of, something that had, was written for students with students. That would have case studies of their own experience of the research modules, that they would also have examples of their work. So how to write about these concepts.
Oh, and by the way, at the end of all that, we'd have a comic strip running through the whole book. I didn't quite know where we pitched it, how we're going to achieve all of that. But funny how life works out and the people that you meet.
So, it was a team effort again with Donna and Lorraine and Brandon to rescue the comic strip. And if you ever need a stickman drawing, then he is your man.
And again, because this work is on Amazon, and we can see the feedback from the students that is also landing really well. And it's funny. So people don't think research can be fun. It is funny. There's loads of really funny cartoons in there.
But we also need to be thinking about doing things differently in education and contributing to our profession. And stepping out of the level five module I had started to work in the Doctor of Professional Practice, originally under Michael Townend, and then later with Alan Williams and it was in Covid. So we changed our teaching approach. We moved online.
It has stayed online, but one of the challenges that we were facing in the classroom was actually in a classroom you can engage really well in in-depth debate and discussion, especially around kind of nuanced things around, whether it's IPA or narrative or like, how do you actually get to grips. And on an online chat room forum, it's just not the same.
So again, bit of a trailblazer at Derby. I thought, why don't we do a podcast series? I could interview some people and we can have that dialogue about research and about professional practice on a podcast. I could interview some really cool people.
So we, then we spoke to the team here and we had the first, DocCasts@Derby (we called it) podcast, but to support our learners because we must be able to do things differently. So you can - it’s still there now, you can have a little look.
So, moving now from, taking a bit of a slight step-wise move back, to my emerging identity as a researcher. So I, I'm now comfortable in saying I'm a qualitative researcher, but it did take a little bit of time to feel like I was in those shoes.
So when I got my first job in higher education, I mentioned a lady called Dorothy Kennerley, and she was trying to foster a research culture. She was a staunch advocate of research and knew how important it was within nursing itself.
And I… fast forward a year, I’ve done my postgraduate teaching qualification, which we have to do, and then I put in an application for departmental funding for a masters, and I got summoned to her office with a “what is this? Where's the PhD applications?”
I said well, Dorothy, I don't know who to talk to. I don't know where to go. I don't know, like, how to have that conversation. So she said, let me make some calls.
And this is what I meant before about opening doors. I am lucky to have had people open doors - find doors where I didn't know they existed. And I hope I can always feed that back to other people that come after me.
So she put me in touch with the team at Southampton. So there was a researcher there, a doctor Janice Brown, and her work was in motor neurone disease but a qualitative researcher. And we had a really good synergy of, of ideas.
And I did my viva, so part time (well the PhD part-time,) and did my viva when I was eight months pregnant with my first child.
I did say to the examiners, if you ask me any questions, I'll just kind of get a twinge there… maybe that's why they went, they went so easy on me.
But… so the PhD itself is on the family experience of traumatic brain injury. In the first year as an acute nurse, I wanted something that would actually speak to my experiences. And the problem that I was seeing in clinical practice, where actually family members were not supported, that family members were traumatised. But as a nurse, I didn't actually know how to tap in to that emotional support that was so necessary at that time.
So, so yeah. So I got that PhD, and it was a qualitative inquiry, and I could see how powerful that subjective inquiry could be and how useful that was to be able to understand the lived experience.
And so, just for those of you who are in the room that might not kind of understand qualitative research, I really like this.. this story. The Buddhist story.
And I like this story, apart from the fact that it reflects the University of Derby's famous turtle, it helps us to understand the difficulty of truly understanding, something that we've not experienced. I'm just going to read this out, so apologies for that.
Once upon a time, a fish and a turtle were friends. The turtle returned from a visit to dry land, and the fish had a lot of trouble trying to understand this dry land, the place where the turtle had been.
So the fish asked a series of questions such as is it all wet? Can I move my fins about it and push my nose through it? Did the ebbs rise up in ways with white foam in them? Does it move in streams?
To every question, the turtle answered no. Finally, the fish confidently concluded “in that case, dry land must be nothing.”
There was nothing the turtle could say in response, because any description the turtle could come up with was entirely beyond the experience of the fish.
And what that tells us is how hard it is to tap into the real, true human experience that is living with a chronic illness, a life disabling, disorder. Unless we've truly experienced it and experienced it ourselves.
And but if we cannot understand something, then we are destined to lack empathy and insight and will lose sight of what is important to the people we as researchers want to help.
So qualitative inquiry helps us to understand that inside perspective when we do not have it. If we can understand that perspective, then we can move and we can, you know, we can change the landscape for those people. And ultimately, that's why we do research, is to make things better for the people that we care about.
So within that landscape, other qualitative research so coming out of my PhD. So if you watch the video on, on LinkedIn just recently, you'll know I've been studying the impact of TBI and more recently ABI and family members for well over a decade.
And what my early work showed was that family members were changing as a result of their experiences and found it hard to make sense of this existential… this weird kind of sense of loss that they felt for themselves in the context of such as a traumatic injury for somebody else. That they lacked a sense of story, they lacked a sense of self sense making.
And this title of this, this paper, which is up here, it says we are not the same people we used to be. And actually, that speaks to the fact that actually, in a family system, when one person has had a traumatic brain injury, and we all understand as a society that an impact on the brain can change that person because of organic damage.
But actually, in the context of this study, what we're seeing are similar existential threats about the sense of self for the for the survivors family. But actually, there's no voice, there's no story, and there's no ability to be able to talk about those things.
After that piece of work, we conducted a meta synthesis, which is a fancy word for saying we looked at all the other kind of research in this area and put it all together. And we really looked at the data. And what we found in that study,
which is really important, is still using that work now, is that actually there are really complex processes of adjustment.
There's not just one point that you reach at the end of two years, for example, or three years. It's not the six stages of grief. It's not… you know, it's not something that resolves. It's something that vacillates over time. And actually putting this desire to reach adaptation, actually the pressure of that is very, very difficult for family members to understand.
And actually, what the studies also have done has highlighted the ongoing trauma that families face, and the potential ways that we can support families. And this paper at the bottom talked about how does the narrative understanding of change in some of these post brain injuries help us to humanise our professional practice?
There's a really lovely paper by Les Todres that talks about humanising healthcare and he talks about the importance of inside a nurse agency, uniqueness, togetherness… and actually these are the things that are innate to us as humans. But actually in healthcare, what we quite often do is objectify, make people passive bystanders, modulization and isolate family members. So, so yeah, so particularly influenced by that, that work.
But actually making room for research is really, really difficult. And I actually gave a talk here recently, a research retreat, which sounds really fancy, but there wasn't a spa, there wasn’t any face packs, so I kind of left them a little bit disappointed about that.
And some of them at the end of the talk came up to me and said “but Charlie, how do you make room for research? It’s just exhausting.”
I don't have any, you know, any particular formula that says how we do. We just… it's like bringing children into your life, you just find the time.
My PhD was part time (or no time as Alan would say,) meta synthesis in my spare time… but if research and publication are important to you and your values stream, somehow you'll find a way.
And also being inspired by the people that you work with. And you think, well, they're doing it, I should be able to do it as well and working together.
So when the opportunity came to research the value of a national pilot project, I jumped at the chance, I have to say, because this is the first time that work had actually asked me to do something. It wasn't just something I wanted to do by myself.
So, in the wake of the Francis inquiry, a national pilot project was launched to give prospective applicants a formal program of care experience, which sounds like a very sensible thing to do, and is often the case, The University of Derby were the first in line to be a site, while lots of other places were arguing about whether we needed it or not.
Again, as is often the case with us, we were trailblazers. We managed to get… I was leading the research arm of the project. We managed to get our study into the NHS approval system, approved and ready to run before the national evaluation team came up to do the national evaluation. And our research didn't land particularly well at the time.
But they said we could still carry on seeing as we were so far progressed. They did allow us to do our research alongside, so what we did was we evaluated that that pre-degree pilot programme in the East Midlands.
We worked across the East Midlands and we found lots of issues around, professional identity, how these, you know, whether they were student or health care assistant or somewhere in between, and how they were merging that… how that identity was emerging over time.
Also, the limit to pre-nursing care experience when you already know that you want to be a nurse and how that was then stunting that kind of growth. And then the difficulty of introducing new roles that lack definition, unclear job descriptions. That's not something we normally do in the NHS.
So I think it's also important to acknowledge that until 20… so there was a, a big piece of research that went on after we did ours. Until 2024, this study was the only paper in the evidence base about that programme. There is now a second, as is that, obviously.
So having had a taste of leading research, super excited, I wanted to do more. And I met with my manager in my appraisal and said, this is really what I want to do. I know I want to do this. And, the comment that came back was, “if you're serious about research, you need to buy yourself. So go find some funding and bring it in.”
I was like okay, I like a challenge, I’ll do that. How hard can it be? Turns out, quite hard! But the amazing thing about applying for your own funding is that you get to bring your own team with you so you can pick your perfect team, people that you respect, admire, that you're going to learn with. People that also respect you.
And we called a meeting, we had this idea for a project, which I'll tell you about in the next slide. But we had a funder called National... so we had a funder, called the National Institute for Health and Care Research. So this is the big funder that supports health care research.
It is a very prestigious funder. And the first port of call for lots and lots of researchers. And the research for patient benefits scheme is a particularly attractive scheme because it speaks to the core of who we are as an applied discipline, because we do research to make things better. But it is super competitive.
There's about a 20% success rate in this particular stream. It’s also, what I have to say is, it is a very… It leans towards clinical trials and particular objective outcomes.
And we wanted to do something a bit different, a bit creative, a bit qualitative - those things won't go well.
But we did our best, so it's a bit of a sheep in wolves clothing (or the other way around.) And so we wrote that, we wrote the grant.
We didn't think that we'd get it and I don't think a lot of other people did either, apart from Mark because he told me that we would. And yeah, so we've got through stage one, then stage two, and I was very surprised.
But that, that project has been the honour of my life to lead. I've led it with Doctor Fergus Gracey and the idea of the project was that in qualitative research, it’s really interesting, in qualitative research sometimes it can feel a little bit like, well, what's the value of it? You know, what's the point of talking to these people? What's the impact? And in this study, what we wanted to do was lean on the strengths of a qualitative approach, which allows people to talk about their story, but give them something to enable them to access that story.
What I hear so often from family members, not always directly, but is a sense of a lack of agency, a lack of - a lack of their own story. The story that they always tell is from the injured person's perspective. It's not from theirs. They didn't have the head injury, so have they even got a story in this experience?
And doing this research, it's based on a model by Doctor Caroline Ellis Hill who was one of my PhD supervisors and drew this very lovely threaded diagram to explain about the stories that we create about our lives.
And we're not just one thing, that in chronic illness, like in her work in stroke, in this case, in brain and traumatic brain injury, actually some things break necessarily but other things don't. And it's as important to celebrate things that don't break in our identity as understand and grieve for the things that we have lost and that stands as much for the survivors families as it does for the survivors.
So I've had this model in my head for quite a long time, and I always wondered what it would be like if I gave family members this model. Would they understand it? So it's in an academic paper, it all kind of sounds, you know, it sounds very theoretical. But what would family members make of it?
So we put together a little box, which you can just see on that, on that video there. They got given some wool and some instructions and some ways of interpreting it. And it was, I have to say, for some people it's just wool in a box. And that's okay.
For other people it was transformational. For the first time, one of my participants sat with her whole family and talked through the whole experience from start to end. They decided to sell their house. It's the first time she'd actually helped her children articulate the pain and trauma that they had been through. So it was a really, really powerful study.
I just want to play this quick video from someone who was one of our PPI representatives, so that’s patient and public involvement. Thank you.
[Patient and Public Involvement Participant speaks via a pre-recorded video]
I think this study is really important because through the use of the life friends approach, I think it gives you the opportunity to talk about things like communication.
And you can use your imagination in that space to get the threats to represent all kinds of things that relate to the situations you find yourself… in terms of trying to describe how you're living your life and to try and aid people's understanding and awareness of some of the more subtle difficulties that exist when you're living alongside people who've got acquired brain injury.
[Professor Charlie Whiffin continues]
So, Wall is one of the family members who joined the research team.
It's so important that when we do research that we work with the people who are affected by the problems that we want to solve.
It's very easy as researchers to be blindsided by the things that we want to look at, even if they have no meaning for the people that we actually want to help.
So talk is spending time with people who are affected by the conditions that we want to investigate, finding out their priorities, and also just what they think about things that this project that would without…
So, we had two co-investigators who were family members. And then we had another four family members who were part of the the team kind of working through the project.
It would never have been the same project or led to the same outcome without their input and their guidance. So I'm incredibly indebted to to them. And we’re still working together even though the project has ended.
We're now looking at other things that we're going to do together. And it also grounds us in what matters to families.
So, another step wise move. So this time that we’re going to reverse a little bit, go back and move the talk a little bit about my work from, narratives to neurosurgery and the shift to kind of qualitative research.
So as you heard at the beginning, I first met Hutchinson or Hutch nearly 20 years ago. What he didn't tell you is when he summoned me to his office under the Freedom of Information Act that I had to bring with me the contents page for my thesis and a publication plan.
I'd never been asked by my supervisors to do such a thing. I was kind of just going off and exploring, I think Cartesian dualism at one point.
And so I gingerly handed over my pitch for my project and he said “do people really get PhDs with things like this?”
To which I replied, “I very much hope so.”
He said, “well, you need an outcome measure. And you need a hypothesis.”
I thought.. I’m not sure about the qualitative research of those - but I did go off and I did have a look at how that would look. I did end up with an outcome measure in my thesis.
But actually I talk about that with great affection because actually, Hutch has been such a champion of everything that I have done. So I think we've been on a bit of a journey together.
When I left Ipswich, to move to Derby, I remember him saying “that's a shame. I always thought you'd come and work for me.” So it's funny how life works out.
So fast forward one PhD, two children, and the very demanding role at Derby and an unsuccessful application for associate professor. I got back in touch with Hutch and he said, come down I have this little group.
Well, he didn't say with his little group was a multi-million pound NHS global health group working to improve neurotrauma outcomes in lower and middle income countries.
But as is his way and as is his way with the people in that group - super generous, super collegiate and collaborative.
And then after this meeting with the little group, I was asked to come and have a look at the original grant that went into the air at NIHR. And Angelos asked… showed me the grant and said “we kind of have this qualitative project here in this theme. You want to do that?”
I said “yeah, I’d love to do that! That's amazing!”
And he said “and we got a PhD student starting. Do you want to supervise him?”
And I said “yeah, that would be amazing!”
And I have been with, I’m blessed to say, I've been with the group ever since.
So this is us and I was a co-investigator on the renewal grant. And also through this work, I work with a very brilliant doctor, Doctor Tom Bashford, in the International Health Systems Group and the rest of the group from Cambridge, who I'm super privileged are here with me today.
So the work that we've been doing in that group - a bit of a journey.
So if you think about where we were several years ago with the understanding of qualitative research, it was the honour of my life when, Hutch presented our work (so mine and Brandon's work) qualitative research at the World Congress for Neurosurgery in Cape Town.
So one of the research studies that I led was neurosurgeons experiences of conducting and disseminating clinical research in low and middle income countries.
And the way that we conceptualise that was… I don't think you see it, but there's a picture of a sign up to which Brandon showed me.
And in that work, we talked… we looked at the things that inhibited research process and the things that facilitated it, and that in the context of a low/middle income country, actually, what we drew in that diagram was the inhibiting space in the middle.
So it kind of… it’s a nice fit with neurosurgery like with synapse but it's that sense of there's all this potential. There's all of this work going on, sometimes in spite of but also because of the conditions of low and middle income countries that make research endeavours so difficult.
I will say that there's some synergy between the conditions in the inhibiting space and working in the university. But that's probably for another day.
But it's really interesting just thinking about the context in which research capacity is built and limited, how people move forward, what voices we don't hear. So yes those were the papers.
So working in that group, spearheading qualitative research has been a little bit interesting at times. It's not the first methodology that neurosurgeons would probably likely engage in that’s fair to say isn’t it?
So coming out of those two qualitative projects, I'm really not seeing much in the evidence base around qualitative research in neurosurgery so I wrote a little paper, talking about the value and potential of qualitative research and what we thought, you know, try as a call to arms for people to engage in this methodology.
And in that paper we wrote that qualitative research was misunderstood and… underused and misunderstood. But that paper was cited in The Lancet Neurology and Lancet Neurology also repeated our calls for more qualitative research in neurosurgery.
But we actually didn't have any evidence behind that particular statement. So I kind of went back and thought we should probably do just a bit of a quick review for the qualitative research within neurosurgery.
That's been several years of work. Three rejections from neurosurgical journals. And it is under review again now.
But essentially what that review shows is there is an increasing prevalence of qualitative studies in neurosurgery, but they're not conducted by neurosurgeons and they're not in neurosurgical publications.
So that's really interesting, just from the fact that actually a lot of that work is being cited in policy documents. It's being cited across a policy document across 15 different countries. So it's playing a critical role in neurosurgery, but it's not actually led by neurosurgeons.
So we'll watch this space when it gets published. We're all a little bit scarred from that paper at the moment.
But actually again, doing something different, not just being content with putting stuff in the academic literature. What else?
So we work together. So again, Brandon, behind the scenes, put all of the infrastructure around NEUROQUAL. So we now have open access qualitative research for neurosurgeons on neurosurgery, designed by members of the NIHR Global Health Research Group on Acquired Brain and Spine Injuries.
And what this then does is actually, again, it's about accessibility. So whereas we were looking before at a book to help level five nursing or health care students understand research, actually there's no qualitative book for neurosurgeons or people working with neurosurgeries that speak to the subject matter that is important in that discipline.
So it’s also an online resource. It goes through all of the, you know, conception of a qualitative data analysis and how to interpret your results.
And we have another podcast, and this one was great. So I got to speak to all sorts of… whereas DocCasts was quite Derby centric, this one I could talk to anybody across the whole world. This is great about qualitative methods.
I even spoke to Virginia Brown who if you're in the discipline, that's a pretty big deal I have to say.
So through qualitative work and working in this group, I was asked to lead on community engagement and involvement.
So in this country, we call that patient and public involvement. This speaks to what we were saying before about the importance of working with people who are affected by our research before we actually research.
This is quite new in neurosurgery. It's emerging in global health. So to put global health and neurosurgery together, that wasn't a huge amount going on.
But I do have to be really careful in that I feel like I'm not doing this work, but I'm working with these amazing people who are on the ground doing projects on pillion rider helmets in India, for example, car seats in South Africa, seat belts, public health issues around folic acid, but also some emerging issues around health literacy, stigma and family needs.
It's just really vibrant seeing that that people kind of catch on to the value of working with communities and building that into the research process.
So we’re nearly done, getting there.
I just wanted to give a bit of a shout out to these incredible women that I'm working with.
But not on that slide are Doctor Kalyani Raju and Doctor Almas Khattak.
But I'm working with Doctor Priya, baby sister Sylvia Massawe, and Syeda Shamal, many of those who are online.
And that project, what we're doing is looking at the non-medical care provider role in safe, effective neurosurgical care.
I'm really lucky to have seen some of the transcripts coming out of Pakistan at the moment. So, the work is being conducted in Pakistan, India and, Tanzania.
I started looking at the transcripts, I have to say, carer experiences are very similar.
So same problems in the assumptions that people will care, assumptions that they can care, but they are ill prepared and there is no support.
But what I'm seeing so far is actually the acuity is much higher. Something that I wasn't prepared to see.
Patients going home with quite early tracheostomies, semi-conscious states and nonverbal. So actually their need… their care need as an informal care provider is much higher and therefore the chance of readmission and neurosurgical complications is much higher. So watch the space for that for that project.It's it's coming along when I start.
But actually I think it's important to start to kind of wrap this endeavour in research, through the fact that actually research isn't enough to drive change. It's just not enough.
We were lucky here to have a staff development session on impact and what impact was. It was quite a few years ago and impact is a big thing in research and actually stops us from thinking about how is my research in a silo actually important to me and what I'm doing and “look at my fancy paper” to actually, what difference is it making on the ground?
And in my sector for the needs of families after care after traumatic brain injury, it’s just there isn't this seismic shift over time. It's the same perennial problems again and again.
And I'm lucky again to work with people like, Doctor Ali Norman and Mark Holloway and we established a group called Anchorpoint which is a national organisation driving change for families after acquired brain injury, because we know that research is a isn't enough.
We need to be changing the political perspective, societal perspectives. And this is the way that we're doing it through research, yes, but also information policy, practice, lives and education.
It’s such an important, important group and I'm blessed to be working with charities such as Headway UK, also Headway Derby, the Child Brain Injury Trust, The United Kingdom Acquired Brain Injury Foundation, Head First, Sane You, British Association of Brain Injury Case Managers, Case Management Society UK.
Because all of this we do this together. This is a huge piece and it's really interesting. We look at survivors of any condition. Actually they're quite often… the problems are that they’re quite well boundaried. But for family members it's across the entire life's course.
It's not the carer, it's the family member. It's the it's the spouse, it's the child. It's the grandparent. It's the lack of societal understanding – it’s is a huge piece of work to do.
But actually if we do that together, we're much more likely to influence change than by doing it ourselves.
So last slide. So what is our moonshot?
So Gail Russo talks about the global health Global Neurosurgery moonshot. So this is mine.
I recently read an article in the New England Medical Journal calling for a paradigm shift where family members were included in the definition of a health care workforce and that by training somebody to use a hoist, it will prepare them for their new life.
If that is all we can aspire to for families after TBI then we have failed. We have failed to understand their complex and enduring needs and their sacrifice and commitment to their loved one.
Yes, we should treat family members as partners, and yes, we should educate them and inform them about what is the road ahead.
But we have a responsibility to both recognise and enhance their role as a carer, but also to enable them themselves to live rich, fulfilled lives.
Alongside this hugely important role, we should ensure their story is heard and validated and we must recognise that they have complex vacillated needs across the life course, and we must be in a position to meet these so that they can and want to contribute to maximise the outcomes of survivors.
But alongside this, they are also able to maximise their own.
Charlie Whiffin Inaugural Lecture video
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